Spot on Eric. As a carrier and mother of cf'er, there is no doubt my mind you are Absolutely correct. Digestive enzmes are now replacing my acipfex that I have taken for years, erroneously thinking I was producing too much acid!!
rubbish, my daughter had 2 x sweat tests and a blood test aged 5 months old. Push for this as finding out as young as possible is the best outcome.
I too have many family members who are carriers as well as two first cousins with CF. Everyone of the people in my family that are carriers have sinus problems( chronic infections/very thick mucus), lung problems, sinus polyps and very bad vitamin deficiencies. Having two cousins my age with CF and seeing what they go through I do believe being a carrier leaves you predisposed to these issues just not with the deadly consequences a cystic fibrosis patient has. I myself have one mutation of the delta f508 Gene with exon 10. I have yet to figure out what the exon 10 part means :/
I am continuing to provide updates here in the hopes that it helps others. At my last MAYO visit my doctor had me double the salt in my sinus rinse to draw more water out of / through the sinus. This has actually helped quite a bit. Having said that I just finished another sinus infection in November that required me to raise prednisone to 40mgs (again). My local ENT, CF and Immunology doctors have now suggested that include Baby Shampoo in the sinus rinse (1/2 tsp in 240mls) also. I am told that CF patients sometimes do this ... the theory being that nothing can live in shampoo. I have been doing this also for about 2 weeks... it is not bad and very tolerable.
I am a CF carrier and have had symptoms over 10 years. Multiple sinus and chest infections/pneumonia. Had 4 sinus surgeries and long time sufferer of bronchiectasis my symptoms are worsening. Did you find any support groups?
Me toooo!!! Im just a carrier and i only found out 4 years ago because i was pregnant. ALL MY LIIIIFE i have had abnormally bad congestion, upper respiratory, & sinus infections, with the worst being bronchitus repeatedly. I always have too much mucus & ive been diagnosed with asma too.
Im with u. I believe carriers can have mild symptoms
Im with u. I believe carriers can have mild symptoms
Hi, I'm going to be as brief as possible. Early last year my 23andMe noted I'm a carrier for F508. It was a shock, mainly b/c I used to sell labs MDx tests for CF and other conditions! We have a "family" cough/hack that has shown up- my dad was ALWAYS clearing his throat. He died in 2012 so I had my mom 23 tested. She was negative. So he was a carrier.
I discovered online something called "Sensory Neuropathic Cough". Data is being gathered on it, but it is a severe cough brought on by various nerve-related signals, depending on the individual. In my case it is sneezing. If I sneeze ≥4x within 15 minutes I'm coughing my lungs out. Studies and anecdote showed gabapentin and gaba- receptor related compounds helped regulate SNC. I tried it, and it has worked incredibly.
So eric I agree with you; I believe CF carriers face issues resulting in diminished gene function. Apparently we're resistant to cholera, though.
I discovered online something called "Sensory Neuropathic Cough". Data is being gathered on it, but it is a severe cough brought on by various nerve-related signals, depending on the individual. In my case it is sneezing. If I sneeze ≥4x within 15 minutes I'm coughing my lungs out. Studies and anecdote showed gabapentin and gaba- receptor related compounds helped regulate SNC. I tried it, and it has worked incredibly.
So eric I agree with you; I believe CF carriers face issues resulting in diminished gene function. Apparently we're resistant to cholera, though.
Here is the latest update in my journey as a CF carrier. I had eight sinus infections last year with the all the issues (less the collapsed lung) that I stated previously. My MAYO doctor tells me that we are now moving to manage the CF Gene. This past month they had me add Dexamethasone 4mg (tablet to dissolve) to my 240ML NEILMed rinse (double salt). I can only be on this medication for one month but can transition every other month if needed. Apparently this is a very dangerous steroid ... This medication is incredible - it worked almost immediately in topically reducing inflammation in my sinus'. I have been able to reduce my prednisone to 5mgs the lowest in 4 years, mucus is minimal, and I have not had a sinus infection in an month. I have stopped the Dexamethasone as of this time and the MAYO has had me double my Budesonide 1% solution in the NeilMed rinse for this month. It has been three days at 5mgs prednisone, mucus is coming back slightly (but not bad yet). I plan to stay at 5mgs (local doctor) this month and restart Dexmethsone in March, to see if I can slowly taper lower. I feel after 4 years we are on the right path. The MAYO has been instrumental in helping here.
Read my posts
I have a daughter wcf. My father's family are cf carriers. My father was "chesty", has asthma drugs, my cousin has COPD, my husband had chronic bronchitis also and died of lung cancer at 57. I am now 59 and had no symptoms whatsover, but lately have been having chest infections even though I have had flu Jab. I am sure symptoms can appear in later life, so never assume you are symptom free.
I have symptoms. I agree that it is CF. I suggest getting tested for CF.
Hi, I was wondering what color your mucus is? Also, do you happen to have sinus problems as well? Thanks!
My mucus varies based on the infections ranging from white, yellow, olive. I am told by the MAYO clinic that sinus infections are the biggest signs of being a CF carrier. My doctor, who is treating me, says that (while he can not prove it scientifically - as he sees only patients who have symptoms) he believes that anyone who has more than 4-5 sinus infections a year is most likely a CF Carrier. He says that symptoms tend to appear in carriers in there 50's and 60's. The disease is primarily northern European ( French, German, English, Irish) as I understand it - from my perspective that means if you have a northern European background and you have 4-5 sinus infections a year you probably have the gene.
I am a CF gene carrier, also, and have to take a mucus thinner twice a day, just to feel as though I am not drowning. It has definitely gotten worse as I have gotten older. I also drink a ton of water (by choice) and my sweat is pretty salty - just ask my dogs, who enjoy grand licking episodes after I have been working out.
Hi
Interesting thread- I was diagnosed with a strange form of asthma when I was 13. I never actually had an asthma attack but only had severe chronic bronchitis and wheezing due to excessive mucus. The asthma drugs didn't really work and only at age 30 did my GP decide to try me on Mucodyne (Carbocisteine) which cured the mucus problem within days.
I don't know if I am a CF carrier but I have a relative who died from CF.
I also have had severe fatigue in my 30s (eventually diagnosed as ME/CFS), as well as unexplained stomach pains in my 20s.
I strongly agree with the notion that it is probably a spectrum- with those with two healthy alleles showing no symptoms and the worst symptoms in those with the two most severe mutations on their alleles (who are diagnosed cases), and everybody else somewhere in between. This makes biological sense as having one bad allele will detriment the body's cells' ability to function compared with someone with two healthy alleles. Also, accumulated damage over time would mean that carriers would be sicker as they get older, which is what we seem to be seeing here.
I think Doctors like things in boxes, they don't like to think in terms of spectrums as it makes a messier clinical picture. Hopefully this message will finally get out so everyone who has a faulty allele gets the help they need.
Interesting thread- I was diagnosed with a strange form of asthma when I was 13. I never actually had an asthma attack but only had severe chronic bronchitis and wheezing due to excessive mucus. The asthma drugs didn't really work and only at age 30 did my GP decide to try me on Mucodyne (Carbocisteine) which cured the mucus problem within days.
I don't know if I am a CF carrier but I have a relative who died from CF.
I also have had severe fatigue in my 30s (eventually diagnosed as ME/CFS), as well as unexplained stomach pains in my 20s.
I strongly agree with the notion that it is probably a spectrum- with those with two healthy alleles showing no symptoms and the worst symptoms in those with the two most severe mutations on their alleles (who are diagnosed cases), and everybody else somewhere in between. This makes biological sense as having one bad allele will detriment the body's cells' ability to function compared with someone with two healthy alleles. Also, accumulated damage over time would mean that carriers would be sicker as they get older, which is what we seem to be seeing here.
I think Doctors like things in boxes, they don't like to think in terms of spectrums as it makes a messier clinical picture. Hopefully this message will finally get out so everyone who has a faulty allele gets the help they need.